CNS Vasculitis: Tips from Experienced Parents

Mom holds toddler daughter

This page contains strategies recommended by parents whose children have had CNS vasculitis. To help yourself and your child get through the illness, you should:

  • Advocate for your child.
  • Keep track of your child's progress.
  • Help your child deal with symptoms.
  • Ask your child's school for support.
  • Educate your child about her illness.

Advocate for your child

Be an advocate for your child in all situations involving diagnosis, drug prescription, and medicine intake. Educate yourself about your child's symptoms, causes of disease, potential outcomes, medicines, and side effects. Speak up for your child's health if you feel the need to. You are a vital member of your child's health care team. Doctors and nurses count on you to share your questions and concerns.

Keep track of your child's progress

Keep a record of your child's medications, symptoms, and progress throughout the treatment. This will be helpful for several reasons:

  • It will help you keep track of the ups and downs of your child's symptoms.
  • It will help you keep track of any questions you may have for the doctor
  • It will also help the doctors to adjust medication dosages and assess how your child is doing.

You should find a way to remember this information that works for you. Here are some tips that other parents have found useful:

  • Use a large calendar or planner to keep track of your child's upcoming appointments and tests. Use the same calendar to note what happened during these check-ups and tests. This system is a good way to record easily forgettable details that you and your doctor may need in the future.
  • Take notes of the date, length, and type of symptoms your child experiences in between regular check-ups and appointments. Symptoms might include headaches, vomiting, or stomach pain. This will help the doctor re-adjust medications and dosages.
  • Write down general notes in a journal or notebook, along with any questions or concerns that you may have. This will help you remember what you want to discuss next time you visit your child's doctor.
  • Keep track of improvements that your child makes. This will help you understand how your child's treatment is going.
  • Take photographs of your child. This will also help document what your child has gone through and how she has improved.

You will have a lot of information thrown at you all at once. Keeping track of appointments, symptoms, and questions mentally is more difficult than it seems. Use a recording method that works for you to help you remember all of the many details of your child's disease.

Help your child deal with symptoms

Throughout treatment for CNS vasculitis, your child will have different symptoms. In the early stages of treatment, your child may have the following symptoms:

  • irritability
  • extreme sensitivity to noise, light, or touch

To soothe these symptoms, parents have found some of the following strategies helpful:

  • covering windows with blankets to reduce the light
  • using eye-covers to block out light; you can buy these or make your own eye blankets out of soft fleece
  • earplugs to make loud noises tolerable
  • stress toys to keep fidgety hands busy and your child calm

Ask your child's school for support

Your child's teacher and school can help in the following ways:

  • They can have your child's class send letters, cards, and emails regularly, to help your child keep in touch with friends.
  • They can send assignments and reading home, to help keep your child on top of her school work.
  • They can help your child keep track of medications when she comes back to class.

Educate your child about her illness

When your child is still sick, she will probably not be able to take in much information about her illness. Keep things simple: focus on how procedures will feel and what the doctor is doing.

When you child wants more detail, you could ask your child's clinic nurse for help with explaining medical terms in a way your child can understand. Try to use concrete examples and analogies to help your child understand. For example, "Your immune system acts like an army that helps protect your body. It normally fights things that might be harmful to the body. In CNS vasculitis, the army gets the wrong information and starts to fight the blood vessels in your brain."

Key points

  • You are a vital member of your child's health care team. Speak up for your child if you believe there is a problem.
  • Use a method that works for you to keep track of your child's progress, symptoms, and any questions you have for the doctor.
  • Your child may be irritable and sensitive to noise, light, and touch. You can help her by keeping the lights in her room dim and giving her earplugs.
  • Your child's school can help your child keep in touch with friends, keep up with school work, and remember medications when she goes back to school.
  • Keep things simple when educating your child about her illness.

Susanne Benseler, MD

Holly Convery, RNEC, BScN